Had my ablation and pacemaker insertion done in July 2022.Never been back to normal health since, fed up with trying to find answers why I'm still suffering.
Had terrible symptoms mentally and physically.
My breathing rate is well below that of someone same age and height, I wheeze, cough, discomfort in the chest, weakness, tiredness, feeling of lack of blood flow especially in lower body, always cold like freezing cold, struggle to stay focused and concentrate, bowel movements aren't the same, unable to do anything physical without strain on my body and getting out of breath with hypertension.
Lucky enough to have a good employer as I've taken a lot of time off work but if I was employed in a physical trade I just don't know how I would have managed.
Life changing!
Frustrating to get support and help and just had enough trying now.
Written by
Nomis21
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I am so sorry to hear that you have been unwell over a long period of time. Have you spoken to your GP or Consultant so that they may make some investigations?
Please feel free to contact our Patient Services Team for advice and support, or just a chat to air your frustrations, we are happy to talk things through: 01789 867 502 or email info@afa.org.uk
So sorry to hear this. We are so often told that pace and ablate will sort matters out and you have found differently. ( Personally I have hesitated to request this in spite of my rather chequered history )
I do hope that someone on this forum can come forward to offer you some helpful advice and reassurance.
Bisoprolol made me feel awful I'm afraid.Constantly cold,out of breath just walking to the kitchen to make a cuppa.Not the drug for me.Contact your gp re beta blockers.I was on the lowest dose too.Verapimil worked beautifully.
I had pace and ablate 3 weeks ago. I was taken off bisoprolol and diltiazem immediately. I had suffered badly with bisoprolol and feel better now. I have a CRT P pacemaker. I am not as breathless now and am building my confidence re going out.
I would query why you are still on bisoprolol and amioderone. I opted to have the pace and ablate as the information I had about amioderone side effects worried me more.
All in all I’m glad I’ve had it and hope to get stronger as time goes on.
So sorry to read you problems and at such a young age too! I really think one has to be proactive in chasing doctors and being a real PITA sometimes so keep at it.
Although bloods have come back ‘normal’, there is often a wide ‘normal’ range and sometimes results can be classed as ‘normal’ but only just within the range. It might be worth them being compared to previous results to see what the difference is in the results 🤷🏼♀️ hope you get sorted
Have you got the numbers? For thyroid never accept "it's normal" . It very often is not normal and usually is sub optimal. There is an awful tendency for hypothyroid results such as mildly elevated TSH to be classed as "subclinical" and not treated despite multiple symptoms. The symptoms you mention could be due to hypothyroidism and/or intolerance to Bisoproplol.
I don't have numbers, when a doctor tells you it's fine verbally I tend to think that's ok then as I have always believed they are the ones that have the expertise, but having doubts now.
Hypothyroidism diagnosis is poor in UK. I was told by my GP my thyroid was fine in 1993 after a blood test. 7 years later by accident a set of blood tests for an unrelated complaint showed a raised TSH. I subsequently found out that the original test had showed a slightly raised TSH and a below range freeT4 . The latter should have told her that I should be monitored but obviously she only looked at the TSH. She was taught at med school that a TSH that is over range but below 10 is "subclinical" and does not need treating. This is rubbish especially if one has symptoms . During that 7 years I put on a lot of weight and constantly felt below par. Even after treatment I did not lose the weight though I did stop gaining. I suspect that the NHS is following this line still as my sister has been told she is borderline for hypothyroidism but has been offered no treatment. Here in France you always get your blood test results sent to you as well as the doctor. So I can read the numbers for myself.
Has there been an investigation into how you are actually breathing? I only had a pacemaker procedure but felt very unwell after too. Thankfully my EP looked into the matter and because I had been so unwell for so long with my heart, my breathing had altered. I was given breathing exercises and this improved matters greatly. I hope you find a resolution to your issues soon Nomis21.
Hi Mickey, I was doing peak flow test 3 times a day through out December which were resulting in a reading of 350-400 ish handed in the results to the GP surgery early Jan and heard nothing since.
With my breathing, I was increasing my oxygen levels but I was breathing so fast and shallow that I decreased my CO2 levels, which was what resulted in my problems. There is a direct issue to not having enough CO2 in the blood stream. This is something that an appropriate Dr would need to investigate. It is probably a higher than a GP conversation.
That seems a low peak flow which could point to a potential lung-related issue, perhaps? Have you been checked for asthma or COPD? I blow about 650l/min. Does yours vary if you take it just before bed and first thing in the morning (it shouldn't but does when asthma is active)? Trying a bronchodilator such as salbutamol then taking a PF reading after a few minutes can be a good test for asthma or similar.
Hi Nomis, I would get an appointment with the GP to ask if any of the bloods are just borderline in anyway which can sometimes affect people being slightly off kilter & also try to see a practice nurse - she can work out what your normal peak flow should be according to your age, height & weight etc. You say you wheeze/cough - have they sent sputum samples to the labs? Are you already asthmatic? If so, are you under respiratory consultant already? Did you have a sedation or General Anaesthetic for procedures? You say you’re getting hypertension - are you already treated for that, do you take readings at home - is this being monitored? This needs getting looked at, If the GP and Practice Nurse can’t get to bottom of it go back to Cardiology & ? respiratory. There could be more going on at same time ( I’m not medical but have been struggling since Nov ‘22 following ablation & asthma/stubborn respiratory infection which is why I suggested the above routes I’ve just been through. Hope you get sorted very soon but as others have mentioned you sometimes have to push to get things looked in!
Hi, was that a ‘normal’ ablation (for AF/Flutter/SVT) or ‘pace and ablate’? If the latter you should not need bisoprolol so I’m guessing it’s the first option with a pacemaker to prevent too slow heart rate. Bisoprolol is known for causing the symptoms you mention so maybe your dose is too high now? How much do you take? Also surprised you have hypertension as your symptoms suggest low blood pressure. It seems your meds need a review.
Hi, I had Wolff Parkinson White and after suffering serious palpitations and af for years I was offered ablation however the ablation carried a high risk of av node damage, hence coming out of surgery with heart block and pacemaker.After the procedure my cardiologist put me on bisoporol due to chest discomfort (stabbing pain and a heavy compression feeling in my chest) lightheaded, dizziness, out of breath and weakness.
My GP recently questioned whi I'm taking bisoporol and wrote to my cardiologist and it was decided to stop the medication, this made me feel worse, mainly breathless and weak especially in the lower half of my body legs, difficulty walking and under exertion.
Iam now back on the bisoporol 2.5mg daily after I told my GP that I felt worse.
GP said it could be hypertension that I'm feeling in my chest, I still get flutters and skipped heart beats, no energy, weakness and struggle for breath with a cough.
I get really cold and just can't get warm, feet and hands turn purple.
There are alternatives to bisoprolol so hopefully you’ll be changed to one. I am still not clear whether you are pacemaker dependent as I thought you wouldn’t feel those symptoms if your pacemaker was in full control.
Av node ablation, third degree heart block, pacemaker dependant, I think that's why my GP was questioning why I am on the bisoporol and scratching his head why iam still getting these symptoms.It's been a journey, I thought I would feel the benefits of the surgery but it's turned out that my quality of life has decreased, I struggle most days with energy levels, chest discomfort, shortness of breath, weakness, and I feel, what I can only describe as jitters and tension in my chest which makes me weak especially in the legs, I get very cold to the point where I shake and the only way to get warm is to have a hot bath 2 sometimes 3 a day
Physically and mentally it's taking it's toll.
At 51yrs old i didn't expect to be feeling like this after a medical procedure that was supposed to make things better.
Starting to think that there has been undue damage caused during the procedure or I have some other complications that's harder to detect such as micro vascular disease.
I was fit and healthy pre surgery apart from the episodes of WPW.
All of the symptoms that you describe will be present with Autonomic Dysfunction and for me the tell tale is about lack of temperature control. I failed to recover from PV ablation in 2014 and just got sicker and sicker. I had to do a lot of digging and researching myself and it wasn’t until I developed specific tell tale symptoms ie: no control over opening my eyes, that my GP referred me to hospital for testing. Even then I saw 5 consultants who could not give me answers. EVENTUALLY I was diagnosed with a supposedly rare - turns out not that rare - autoimmune disease which also affected my Autonomic System and was probably exacerbated by Ablation and the drugs used in sedation (had I had a GA I learned later - I would probably have been worse) and all of the heart drugs including Bisoprolol - I now have a Red Alert on my file to never be given it.
Dysautomnia can be caused by many things from COVID to Diabetes and Autoimmune and nerve damage. There are lots of differing symptoms, often dependent upon the cause.
This information may or may not help you but you seem to be searching for answers which no-one seems to be able to help you with and I know exactly how that feels so hope this helps just a little. Keep on pushing for answers and if nothing else, ruling out possibilities.
Treated since 2015 I am now so much better informed, I am now stable and mostly able to control all my symptoms although there are triggers such as not recognising low glucose levels as happened yesterday, when I can suddenly get very cold and if I cannot get food and warmth quickly I get rigours - not pleasant.
Sorry you are feeling so poorly. I’m not medically qualified and I don’t want to muddy the waters but have you taken your temperature? I’m wondering if you may have a blood/heart infection. I have had bacterial endocarditis and your symptoms sound similar to those I had at the time. Take care.
Had my pm September, Ablate November. I am continually breathless still. Have had echo, chest x-Ray. Next week work up at hospital with Biotronik technicians. Living in hope!!
Sorry to hear u are so unwell, I can only suggest 1 thing and it's Milled Flax seeds, I sprinkle a level tablespoon on porridge, with a banana and a few prunes every morning with a dash of honey, but dose not suit every one, I've had porridge banana and prunes every morning since having a quad heart by pass 1999. hope you get sorted, milled flaxseed great for bowels
hi, sorry things are still not sorted for you yet. Medication can do a lot of temporary damage with its side effects. Have they tested your Thyroid as that is a major problem with the drugs we all take. Also the fact you’ve been on the nasty drug Amioderone says your body needs to be weaned off that slowly as it stays in you for ages.
Having a pacemaker has been a great relief to me, it’s my guardian angel. Keep pestering your doctors, they will find a solution if they persevere.
Hi dinamite, i have had previous thyroid tests done last year, all fine. I came off amioderone last year also after taking for about a year. Bisoporol is my only prescription now and I feel it does help, I know this as I was recently taken off it and symptoms got worse and there has been an occasion where I forgot to take it and again symptoms got worse.
Which is what I done when I was told to stop bisoporol, this is something I did on my own initiative (reduced the dosage) not what the doctor told me, they suggested I just stop and gave no instructions of coming off it gradually other than giving advice that I may feel symptoms of fast heart rates.
well that’s good to know you are not being poisoned by drug side effects. Next thing to question is the pacemaker settings. Are they correct. Mine has been tweaked several times by the team and every time it improved my breathlessness etc.
Thanks, it's difficult trying to find a balance and coping with the symptoms, I had pacemaker insertion and ablations done in one procedure July 22. Had years of AF and palpitations previously due to having WPW.
Gosh, I really feel for you. I had 2 cardioversions and 3 ablations last year that didn't work and have many of the symptoms you are experiencing, but not to the same degree.Breathlessness seems worse than pre surgery...I can go for walks but any level of incline and I have to stop, can't imagine getting back to jogging and I'm forever cold. I have had thyroid damage from amiodarone and on thyroxine which has helped the fatigue an awful lot but I still really struggle. I'm 47 and it absolutely impacts work and QOL but I'm also functioning (thanks to hrt and thyroxine more than anything I think). I'm told pace and ablate is next for me but they won't do it yet...too young I'm told. Plan is to review meds in next month or so and move from rhythm to rate control. Hoping that might help as heart rate is still pretty high! I'm hoping getting that down will aid the symptoms and improve energy, breathing, chest discomfort etc.
Sorry for this long comment, but really want you to hear this as I believe you obviously need an opinion from a doctor who is interested in getting you well! I'm only a fairly new A-F patient but found three senior cardiologists in my State in Australia simply gave unconcerned, 'pat' responses and advices to apparently all their heart patients, were eager to get you out the door as quickly as possible, without explaining much at all and content to simply hand out prescriptions for drugs they seem to give to almost everyone without even first discussing how safe these are, or what to expect from them. The arrogance is palpable. When I let it be known I objected and would take only what I felt was necessary and safe for me, (the right of every patient) I was subtly "blacklisted" from doctor to doctor by them trying to make out I was the problem (especially because I looked up the drugs on the Internet and was shocked to find very concerning information and warning for patients with certain other conditions such as COPD (which I also have). Doctors here mock patients who rely on the Internet, but I've found it extremely helpful in fact, at least thus far, and I'm careful to ensure I go to reliable medical sources for information. However, the warnings against COPD sufferers taking some of the medications they prescribed wasn't even mentioned to me by these 'specialists'! This caused me great anxiety and fear, as I was then having very frightening symptoms, and for many months these didn't change. Nobody seemed to care or investigate them further, and I was living on my own. I was forced to again do my own Google research, and thank God that I did. Just fyi in case you've been prescribed statins, there are alternatives to statins (the side-effects of which can be very severe - I also found out from others that once you're on statins, you're on them for life). None of these 3 Cardiologists even questioned if these were indicated in my case - just handed me scripts with no discussion at all apart from "just in case you may have a heart attack", and my local GP told me only last week he doesn't even consider statins are indicated in my case anyway!
If I were you I'd do what many patients are thankfully doing - cut to the chase, save yourself time, wasted effort and money and email Dr Sanjay Gupta inYork, U.K. - York Cardiology. He's a Consultant Cardiologist - highly educated, very understanding and helpful. He doesn't practice just to get money out of patients! He has a channel on YouTube which I urge you to please also visit and view his video advices. As you'll see, he set up his channel and site to educate those of us who have gone on this merry-go-round of regurgitated but ineffective medical drugs and inattentive and uncaring specialists. I think he's marvellous, as do all the commenters under his videos. He takes the fear and anxiety, and worry about what people are going through and he knows his subject very well. He explains what can and should or shouldn't be done and the harm that can be caused by incompetent or careless practitioners. I've posted this advice to a few people on these HealthUnlocked comments and they're responded in total agreement regarding Sanjay. You can also book a phone consult with him or perhaps, as you live in the UK (lucky you!) get to see him in his York clinic. Here's the link to his York website: youtube.com/results?search_...
- and his email address is yorkcardiology@gmail.com
Here's his description of how he believes a medical specialist should relate to his patients: (I feel it will certainly encourage you!). Of course, if Sanjay believes a medication is indicated, he says so also but along with the rest of us, he appears to agree that we are greatly "over-pilled"!
"Having spent almost 28 years in Medicine, i have come to the following conclusions:
I believe that the healthcare industry rarely ever provides healthcare. Instead it provides disease management by using expensive and potentially harmful pills to mask symptoms
Secondly I believe people come to see doctors to be engaged, educated and empowered rather than being given a set of pills before being shown the door.
I think lifestyle management is perhaps the single most effective therapy in medicine and yet largely ignored because it is boring and not as profitable as promoting the newest and often most expensive tablet.
I do believe that high quality reliable jargon-free information about health should be available at no cost to everyone in the world. Unfortunately many people rely on Google to answer their questions and are often left confused and anxious because of the unreliability and variability of the quality of information
I think the media, the pharmaceutical industry and often the healthcare industry profit by promoting fear rather than providing reassurance and empathy
I want to do things differently.
I want to use the power of the internet to provide everyone with a high quality reliable and evidence-based resource for medical information.
I want to impart knowledge in an empathic and reassuring manner.
I want to empower patients to take control of their health by addressing their lifestyles and preventing disease from happening in the first instance.
Most of all, i want people to stop being fearful and anxious about their health, by getting them to focus on improving their quality of lives and living fearlessly."
I believe Sanjay will clarify things for you, and give you the best advice. I do hope and pray you will contact him because I think you'll be very glad you did.
But I have always been active in knowing about my health and acted on it.
Now at 74 I have been through the milll!
After having tonsils and andenoids out at 5 years life moved on.
Bad periods which we finally medicated on INDOCID by gynaecologist life moved on.
But in 1987 an indirect right ingroinal hernia was required and that gynaecologist talked me into hysterectomy at aged 38. Took me beyond 3 mths to get over that.
I had implants of oestrogen until back in NZ discontinued by Pharmac.
2000 finally my gall bladder was surgically checked. It had disintegrated.
Diagnosed with B12 definiciency 2011.
2019 I struggled with systolic level.
But in Sept with no drugs I experienced a stroke with AF. 4 days later a carotid scan showed I had thyroid cancer. I was given metroprolol even though I said no to it.
4 months after arguments in my triage team was easy and successful.
I refused the usual follow on of RAI Radio Active Iodine. For it it is easy to stay at the optimum TSH level.
I declined the Endocrologist (the Dr who prescribed Metroprolol) to stay in Suppression.
A year later LOW RISK patients do not need RAI or Suppression.
I have had my 3rd yesr ALL CLEAR from a Neck Scan.
I will fight for my rights - the right to MANAGEMYHEALTH.
P.S. Sorry, I've just noticed that the YouTube channel link I posted to you isn't being allowed by the HealthUnlocked system. If you go into YT and type in the search bar "Dr Sanjay Gupta" or "Dr Gupta York Cardiology" that should bring his videos and details up, however.
Hi Nomis21, like you I had a pace and ablate mid year 2021, has been fine and back to normal until late 2022 due to a stricture in the vein carrying the Pacemaker lead to my heart. Otherwise been ok and back to normal, for a 78 year old, play golf 3 x per week.
My biggest issue was with bisoprolol, this caused me most of the symptoms you are experiencing. You have had many replies which all have merit, to see your Consultant or GP i think makes sense and ask re bisoprolol whether you can drop it. I am now only on apixaban for blood thinner.
In 2019, I had a pacemaker fitted after an ablation that discovered I had sick sinus syndrome (rate too low) but never fully recovered - breathless, chronic cough, low pulse ox, extreme fatigue with only the mildest exercise. (I had a heart attack and kidney failure the day after the ablation).
Over time, I did regain some strength - after about a year, I could take a shower without getting nauseous, was able to do about 10 - 20 minutes in the kitchen without needing to sit down but that's really as good as it got. Like you, I was on amiodarone for a year afterwards and I think some of my symptoms improved after I was allowed to go off it but definitely not all.
I still had unfixed areas of Afib but was reluctant to have another ablation - unfortunately my Afib fired up badly last September and I just had a second ablation three weeks ago. It seems like this one might have worked but still to early to say...
Anyway, as to you - I agree that you must keep pushing your doctors to review your case and why you are still feeling terrible. I know it's difficult but this is YOUR life.
Secondly, you might have undiagnosed sleep apnea. Apparently you don't need to snore to still have it. Ask for a referral to a sleep clinic to at least rule it out.
Thirdly, after my second ablation, I was even more breathless. An albuterol inhaler definitely helped.
Fourth, get a pulse oximeter - if your pulse ox is 90 or below consistently during the day and the inhaler doesn't make it better, you might consider getting an oxygen concentrator. If you do get diagnosed with sleep apnea, then a device to ensure you get enough oxygen should be prescribed but you may still need an oxygen concentrator during the day.
Fifth, other undiagnosed illnesses - thyroid, Vitamin D deficiency, iron, kidney function, etc. Ask for the results and take them with you to other specialists you see.
Sixth, fight for your health! I know, this is repeated but it cannot be said enough. You can get your health back - if not as good as before, then much better than it is today.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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